Jill's Journal

Patsy Stewart  Jill, first of all, I want to say, ‘Welcome!’ Adam has created an amazing website chock full of information along with a great support group of others who have went through and survived (!!!) a lot of these procedures.
I had a TAVR procedure in December of 2020 after a failed OHS in November. You can read my story if you’d like to.
First of all, if you are not comfortable with your surgeon, either find a different one or tell him your concerns. This is a time in your life that you need to have your mind at ease with whom you have chosen to work with you. There is usually more than one in the same office. Always remember that YOU hired them, not the other way around. In my case, my cardiologist and the surgeon were both working with me during my TAVR procedure.
The TAVR procedure was about the most amazing thing I have ever went through. I was the first patient of the morning, so I arrived a little before 5:30AM. You will actually have a team of professionals working on you during the procedure. It is required that you need to have a structural heart clinic appointment, an echocardiogram, an angiogram, a CT scan of your heart and abdomen and a cardiovascular surgeon appointment.
There is no surgical incision. Only what I would call entry wounds about the size of a big needle poke. I had the transfemoral approach where they went through both left and right blood vessels in my legs.
The CT scan gave them a lot of information….it basically showed them the ‘road map’ they would be using so they would be aware of any twists or turns or narrow places before trying the procedure. They use this information along with calipers to make certain that they can get from point A (the entry in your groin) to point B (your heart valve that needs replaced). There has to be room to get the valve to your heart. One of the entry points will be for the valve to be threaded through. The other entry point is to guide them on their journey…this was how it was explained to me.
I was sedated, but awake and aware of what was going on. There was no pain for me. I’m thinking it took approximately 3-4 hours. After the procedure, you will spend some time in the recovery room before being taken back to your room. You will need to lie flat for a few hours, but the time passed pretty quickly for me. I was hooked to heart monitors and such, had several blood tests, a couple of echocardiograms to make sure the new valve was working and in the right place and the nurses were in and out of the room checking on me quite frequently. It is usually a 1-2 nights stay. I spent the night and was released the next evening. There is a chance that you might need a pacemaker, but they will monitor you pretty closely and only insert one if needed. They make certain that you can walk the halls a few times before being released. I was still on the OHS plan, but you will be on light duty and a 10 lb. weight restriction. No driving for 3 days. Follow up appointment in a week and then a year follow up echocardiogram.
It worked wonders for me and I try to thank God every day for a second chance. It truly wasn’t that big of a deal with me, but I could have been pumped up on adrenaline trying to survive. 😉 I would definitely do it again and I would recommend it to anyone who has the chance to get the TAVR procedure.
If I’ve left anything out or you have a question, I’d love to help you. You truly don’t have to be too anxious. It’s probably nothing like you are anticipating. I’ll keep you in my prayers. Oh….I turned 63 in January. ~❤️

Patsy Stewart  I should also add that you will be on either blood thinners or aspirin for the rest of your life. I am on Eliquis, but I was already on it beforehand and it was no big deal for me. Also, before any dental procedure you will need to take antibiotics the day before because of infection that could go to your heart. I have the Evolut PRO PLUS valve.
You will carry a card with you for 3 months because of the incisions in your groin area. You will also receive a temporary card with information about your valve. They will send you a permanent valve card in the mail a few weeks later.

Jill Frey  Hi Patsy, First off I want to thank you from the bottom of my heart for all the detailed information you have provided me with, I am beyond grateful for all your input. The surgeon I saw was referred to me by my cardiologist and by a family doctor we greatly trust. He has supposedly done more TAVR procedures then most surgeons in the country. He have already had the CTA (cat scan of heart and abdomen) and also had the catherization done. He did not mention anything about a structural heart clinic appt. what exactly is that? The next step for me is the blood work and and covid tests and from what I understand that is it. I have had the echo prior to seeing him along with a TEE and brought him all the reports and discs. He also will go through the groin and I will be sedated but not fully out. Did you know what was going on while they were doing the procedure? I know you have to lay still after due to the possibility of bleeding. Were you able to use the bathroom or do the insert a catheter? Where did you have your surgery done? Do you mind me asking why your OHS was not successful? My cardiologist rather I do OHS because of my age and the fact that is should last much longer but I am an losing my mind with fear and have another medical issue to worry about so the long recovery from OHS is something I am not comfortable with. Why is it that you need a card because o the incisions in your groin, that was not mentioned to me. They said i would be put on plavix which is like a stronger aspirin for 6 mos. How long do they say the valve can last? I was told that they dont have enough data because the majority of people who have gotten TAVR in the past are either much older or have numerous health concerns so the valve outlives them, the hopes are that the valve lasts 10-15 years but I was told they dont have the data to prove that which is worrisome for me.
My anxiety is so over the top, I am petrified about the thought of all the things that could go wrong and hearing your story really did help me. Thank you so much for sharing.
How much pain were you in after the procedure?

Patsy Stewart  Jill, I’m sorry that it’s taken me forever to answer your questions. Sounds like you have been through all of the testing procedures are are ready for yours. For OHS, they had me to meet with my surgeon. For the TAVR, they had me to meet with what they called the TAVR team. The RN and assistant even came to the place where I had my CT scan performed. I was allergic to the dye, but had to take some medications that would counteract the reaction. They wanted to be present in case I had a reaction, and also to make sure they had the information they needed when the test was performed.
I was amazed to be awake and I thought that I knew what was going on, but I actually didn’t. When I was wheeled into the room, I was aware of all the people in there. They were buzzing around doing all sorts of things getting me prepared. I remember my nurse holding my hand and explaining my case to everyone and telling me and them what a miracle it was that science had given me a second chance. They cheered me on. I remember seeing all of the equipment and the large tv screen above the end of my bed. I can remember my cardiologist arriving and greeting me. I can remember when they started the procedure and they told me each step that they were doing, and then…..I just remember being aware that they were working on me. When it was over, I can remember them putting pressure on the wound sites and being cleaned up and wheeled into the recovery room. It was actually an amazing process. There was no catheter, but I didn’t get up for the bathroom until my hours to lay flat were up. I actually wasn’t laying flat. They elevated the bed a bit. I just laid there and praised God for the miracle He had performed in me. The reason for the card is because they put a plug in the incision site to stop the bleeding. Nobody can access those blood vessel until the plugs are dissolved, which will take about 3 months. As far as knowing how long the valve will last is a mystery to me. It was my only option, and I guess I didn’t want to worry about that. After the procedure, I didn’t actually have any pain in my groin area that I can remember. My procedure was performed at Cox South in Springfield, MO. The reason my OHS was unsuccessful was because I had radiation to treat Hodgkin’s Lymphoma several years ago. It has damaged a lot of areas in my body…. my heart being one of the damaged areas. My heart has burrowed its way down into my chest, is twisted and turned and covered in scar tissue. The surgeon took off several layers of scar tissue, but he had to stop the surgery because he said I wouldn’t have survived. He just flat couldn’t get to my heart and then, it was in a position that he couldn’t have replaced the valve. I was supposed to have some other things repaired, but since he couldn’t get to it, I only had the aortic valve replaced using the TAVR procedure. There is a webinar happening this afternoon that Adam has posted. I’m planning on attending and learning a few more things. I hope you can join in as well. I’m sure the information will help you. I pray that your fear subsides. You have enough going on without trying to think of all the ‘what if’s’. Trust and believe even if it’s the hardest thing you’ve ever done. ~❤️

Jill Frey  Patsy, I honestly am in tears reading your post. I cant begin to thank you for the info you are sharing with me. It helps to know a little bit more of what to expect. I had no idea they put a plug in you to stop the bleeding. I remember that same type of experience being taken in for the catherization, All the people scurrying around and all the equipment all over the place. They have everything so down pat they all have a job to do and they do it well. I remember saying Im still wide awake I hear everything your saying and the doctor kept asking for more drugs LOL. I felt like I was in a medical tv show, I felt like i was starring n an episode of chicago med and I said that and the nurses laughed thats when I knew the drugs were starting to take effect. You sound like such a hero to me, you have been through so much and talk about your experience as if it was so easy. I wish I could be more like that. I am so happy the procedure was successful for you and you are a wonderful advocate. I also attended the webinar Adam hosted yesterday and I thought it was very informative. I wish I were able to use one of those surgeon they spoke about the details in such a manor that made me feel more at ease and they seemed to really know everything possible. Sadly I live in NJ and going that far would not be an option for me. Thank you so very much for all the info. you shared with me, you really are a special kind of person and it is very much appreciated. Honestly this is me trying my hardest, I dont know how to not worry since I was a child I have been a worrier. Enjoy the weekend! Stay healthy <3